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  • 1
    Electronic Resource
    Electronic Resource
    Health-related quality of life of patients with genetic skeletal dysplasias (1998)
    Springer
    European journal of pediatrics 157 (1998), S. 114-121 
    Details
    ISSN: 1432-1076
    Keywords: Key words Quality of life ; Skeletal dysplasias ; Chondrodysplasias
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract While medical knowledge on genetic skeletal dysplasias has expanded, very little is known about the patients' health-related quality of life (HRQOL). To test the validity and sensitivity of the fifteen and sixteen dimensional measures of HRQOL in patients with chondrodysplasias, we examined 121 adults aged 16–54 and 19 adolescents aged 12–15 with achondroplasia, cartilage-hair hypoplasia and diastrophic dysplasia. The age and sex standardized overall HRQOL score of the adult patients (0.885 on a scale from 0 to 1) was significantly lower than that of normal controls (0.928) (P 〈 0.001). The difference in the HRQOL between the patients and the controls consisted mainly of the differences in dimensions of mobility, usual activities, sexual activity and discomfort, for which the patients reported a significantly lower status (more problems) than the controls (P 〈 0.001). Adolescent patients demonstrated HRQOL profiles similar to those of adults. However, age-specific problems occurred on the dimensions of school and hobbies, friends and physical appearance (P 〈 0.05). In a detailed examination of different patient groups, some clinically unexpected findings were observed, suggesting that denial is at least in part involved. Conclusion Subjective assessment of HRQOL of patients with chondrodysplasias is valuable for provision of optimal care. In treatment and management special attention should be paid to those dimensions on which the patients' perceived status is currently suboptimal, especially during adolescence which probably is the most critical period in the lives of these individuals.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1007/s004310050781
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  • 2
    Electronic Resource
    Electronic Resource
    Chromosome number correlates with survival in patients with malignant pleural mesothelioma
    Amsterdam : Elsevier
    Cancer Genetics and Cytogenetics 62 (1992), S. 21-24 
    Details
    ISSN: 0165-4608
    Source: Elsevier Journal Backfiles on ScienceDirect 1907 - 2002
    Topics: Medicine
    Type of Medium: Electronic Resource
    URL: http://linkinghub.elsevier.com/retrieve/pii/0165-4608(92)90031-3
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    Paper (German National Licenses)
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  • 3
    Electronic Resource
    Electronic Resource
    Comparison of DNA and karyotype ploidy in malignant mesothelioma
    Amsterdam : Elsevier
    Cancer Genetics and Cytogenetics 60 (1992), S. 8-13 
    Details
    ISSN: 0165-4608
    Source: Elsevier Journal Backfiles on ScienceDirect 1907 - 2002
    Topics: Medicine
    Type of Medium: Electronic Resource
    URL: http://linkinghub.elsevier.com/retrieve/pii/0165-4608(92)90224-V
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  • 4
    Electronic Resource
    Electronic Resource
    Elevated cerebrospinal fluid leukocyte count and protein concentration at diagnosis: independent risk factors in children with acute lymphoblastic leukemia (1988)
    Springer
    Annals of hematology 56 (1988), S. 265-268 
    Details
    ISSN: 1432-0584
    Keywords: Prognosis ; Children ; ALL ; Central nervous system ; Cerebrospinal fluid
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Summary The aim of this study was to investigate whether determination of the initial cerebrospinal fluid (CSF) protein concentration and leukocyte count in children with acute lymphoblastic leukemia (ALL) could yield useful information about the patient's central nervous system status and prognosis. The population-based unselected series comprised 160 children. The mean follow-up time was 72 months (range 25–143 months). Both the CSF protein concentration and the leukocyte count, if elevated, were significantly, although not independently, associated with diminished probability of event-free survival. The patients were divided into three groups for the final analyses: those without any abnormalities in the CSF (n=133), those with elevated protein concentration and/or elevated leukocyte count, but with no malignant lymphoblasts in the CSF (n=21)), and those with malignant lymphoblasts in the CSF (n=6). The probabilities of 5-year event-free survival for the first and second group were 65% and 15%; the probability of 2-year event-free survival for the third group was 17%. These differences were statistically significant (p〈0.001). In multivariate analysis the relative risks of death or relapse for these groups were 1, 2.8 (95% confidence limits 1.5–4.9), and 7.6 (2.4–24.3), respectively (p〈0.001). The inclusion of an elevated CSF protein concentration or leukocyte count in the risk group criteria of further trials should be considered.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1007/BF00320287
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  • 5
    Electronic Resource
    Electronic Resource
    Quality of life in early adolescence: A sixteendimensional health-related measure (16D) (1996)
    Springer
    Quality of life research 5 (1996), S. 205-211 
    Details
    ISSN: 1573-2649
    Keywords: Adolescents ; children ; measure ; quality of life ; self-assessment
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract While data on the health-related quality of life (HRQOL) of adults are accumulating, very little is known about the HRQOL—and especially the perceived HRQOL—of children. In our study we introduced a 16-dimensional, generic self-assessment measure of HRQOL (16D) for early adolescents, and demonstrated its use with four populations of children aged 12–15: (1) 239 normal schoolchildren, (2) patients waiting for organ transplantation (n=5), (3) patients with genetic skeletal dysplasias (n=19), and (4) patients with epilepsy (n=32). The HRQOL profiles of the patients differed significantly according to the diagnosis, giving support to its construct validity. The reliability of the measure was high: its repeatability coefficient was 91%. The quality of life ratings of the healthy boys and their parents differed on the dimensions of distress, vitality, speech, mental function, and discomfort and symptoms (p〈0.05). In addition, there were significant differences in the health-related valuations between the girls, boys and their parents. We conclude that the assessment of quality of life of adolescents should be based on data collected from the adolescents themselves. Further, the 16D is so far the only generic HRQOL measure designed specifically for this purpose. It is capable of differentiating the HRQOL of healthy adolescents as well as patients with various diagnoses. Our experience also indicates that it is easy to use, yet it seems comprehensive, reliable, and valid.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1007/BF00434742
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  • 6
    Electronic Resource
    Electronic Resource
    Quality of life in pre-adolescence: A 17-dimensional health-related measure (17D) (1996)
    Springer
    Quality of life research 5 (1996), S. 532-538 
    Details
    ISSN: 1573-2649
    Keywords: Assessment ; children ; measure ; pre-adolescent ; quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Although interest in the health-related quality of life (HRQOL) of children has increased in the last years, validated methods for assessing the HRQOL-and especially the perceived HRQOL—of children have been missing. We introduced a 17-dimensional, illustrated, generic measure of perceived HRQOL (17D) for pre-adolescents, and demonstrated its application to three populations of children aged 8–11 years: (1) 244 normal schoolchildren; (2) 22 patients surviving organ transplantation and (3) 10 patients with genetic skeletal dysplasias. The HRQOL scores and profiles of the patients differed significantly according to the diagnosis, giving support to its construct validity. The reliability of the measure was high: its repeatability coefficient was 95%. As a structured interview of 20–30 minutes, the measurement burden is reasonable. We conclude that the assessment of quality of life of pre-adolescents can and should be based on data collected from the children themselves. Our initial experience indicates that 17D is comprehensive, reliable, and valid.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1007/BF00439227
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